Ullrich MDA Fact Sheet Update Project - YOUR assistance is appreciated...

[aaricaj]

Good afternoon,

As mentioned in a post on Sunday – I volunteered this past January, to help with compiling updated information on UCMD, based on what is currently available out there in the big, wide world of internet information – when someone does a search and wants to know more about UCMD.  Either for their own family – or by a Doctor or PT who may be just learning about it, or perhaps a caregiver who will begin working with a child who has it, and wants to learn more! 

There are 3 locations/links that I found – that offer information.  Number 1 below, is the one that was available on a UK website, through the MDA – that I used a lot when we first found out about Robyn’s Diagnosis.  As she’s grown and progressed, I’ve noticed it’s very much out of date.  Number 2 below is what you find if you type in UCMD on the MDA.Org Website – where most people understandably so, first start their search for info on any type of MD.  They’ve unfortunately taken away the more specific information on Ullrich and now just lumped it into one large description of CMD, which for me – isn’t enough.  It doesn’t satisfy me.  I liked that there was a “Fact Sheet” to be found for just what my daughter had and like the MDA has on so many other types of MD.  I would like to see this be singled out again, like the prior PDF…just current.  Within that information on CMD, there is a small second link that takes you to very brief info listed in a “Rare Muscular Dystrophies” pamphlet from all MDA offices if you click on the word Ullrich CMD (which surprisingly enough, features my little girl Robyn’s photo still  ), but it’s not enough info.  Just a small blurb about different CMD’s.  Lastly, the 3rd link below is from the CURECMD website, that also gives a brief description, but not a lot, because there’s not to pull from yet.

How can YOU help, and make a difference moving forward?

I’m so glad you asked. 

If each of you who either have UCMD yourself, or have a child or family member with UCMD, would read the fact sheet on number 1 below and go through the other two sites – and then send me TWO LISTS: One list that singles out items included on Fact Sheet that are not helpful, and a second list that delineates items/information they believe should be included on Fact Sheet.  I will then compile this data and the information that most people found would be beneficial to add, etc – and send it to Anne Rutkowski, who will submit the revision to both Dr. Bonnemann and the committee that originally drafted the fact sheet and then ultimately…it will get to the MDC person in charge of Fact Sheets.  PLEASE SEND LISTS TO: aarica.gutierrez@hds.com


1)    http://www.cmdir.org/images/stories/Ullrich_congenital_MD.pdf

2)   http://www.muscular-dystrophy.org/about_muscular_dystrophy/conditions/96_congenital_muscular_dystrophy_cmd

3)   http://curecmd.org/types-of-cmd


Deadline?:

Ideally, I would appreciate having feedback from anyone interested in having their input known, by August 8th.  I will then get this to Anne just after the conference finishes – which will allow any new findings to be added by her or Dr. Bonnemann – as pertinent to the information I will have compiled.

Thank you so much for your help.

I look forward to hearing from you. 

Cheers,
Aarica Gutierrez
Mother to Robyn -  Age 8 -  San Jose, CA